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Science & Money; News/Business. (2011) The high cost of end-of-life care; everyday plastics impact on people's health; the controversy over patenting of specific human genes.

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Us 9, Dr. Swan 4, Genae Girard 4, Dr. Byock 4, Charlie 4, Morley 3, Dr. Snyder 2, Lori Andrews 2, Lisbeth 2, Johnson 2, Charlie Haggard 2, Cisco 2, Brac 2, Cnbc 2, Marcia Klish 2, Dr. Shanna Swan 2, Dr. Elliott Fisher 2, Steve Kroft 2, Lesley Stahl 2, Lisbeth Ceriani 2,
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  CNBC    60 Minutes on CNBC    Science & Money; News/Business.  (2011) The high cost of  
   end-of-life care; everyday plastics impact on people's health;...  

    December 1, 2013
    8:00 - 9:01pm EST  

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on the new tempur-choice with head-to-toe customization. the triple choice sale ends sunday, thanksgiving weekend. ♪ sleep train ♪ your ticket to a better night's sleep ♪ >> last year, medicare paid $55 billion just for doctors and hospital bills during the last two months of patients' lives. it's a perfect example of the costs that threatened to bankrupt us and how hard it's going to be to rein them in. >> genes--as a result of them, you've inherited some of your family's finest qualities, along with predispositions to deadly diseases. you probably know that science has made giant leaps in detecting and treating some of those illnesses, but what you probably don't know is that at the same time, biotech companies have been patenting human genes.
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that's right. whether you like it or not, a vital part of who you are may now belong to someone else. >> let me just examine him. >> people are worried more than ever about how the chemicals we're exposed to are affecting our health. among them, a family of chemicals used in everyday plastics known as phthalates, which congress banned in toys after a study by dr. shanna swan. welcome to 60 minutes on cnbc. i'm lesley stahl. we'll be exploring the world of science in this episode. later we'll bring you morley safer's story about the human genome patents being awarded to biotech companies and the proprietary control they now have over part of who you are. and then my report on a ubiquitous chemical called phthalates, which is in everything from perfume to children's toys, but which may also be causing birth defects.
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but first, steve kroft's story on the enormous amount of money being spent to treat people as they approach the end of their lives. how much money? well, in 2009, medicare paid $55 billion for doctor and hospital bills for patients as they approached the last two months of life. to give you some perspective, that's more than the budget for the department of homeland security or the department of education. and as we reported in 2009, most of those bills were paid for by the government with few or no questions asked and with an estimated 30% of the treatments having no meaningful impact. >> ms. klish, it's dr. byock. >> marcia klish is either being saved by medical technology or being prevented from dying a natural death. >> we're just here checking on you. >> she's been unconscious in the intensive care unit at dartmouth hitchcock medical center in lebanon, new hampshire, for the better part of a week.
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one of her doctors, ira byock, told us it costs up to $10,000 a day to maintain someone in the icu. >> this is the way so many americans die. something like 18% to 20% of americans spend their last days in an icu. and, you know, it's extremely expensive. it's uncomfortable. many times they have to be sedated so that they don't reflexively pull out a tube, or sometimes their hands are restrained. this is not the way most people would want to spend their last days of life. and yet this has become almost the medical last rites for, you know, people as they die. okay, let's go see her. >> dr. byock leads a team that treats and counsels patients with advanced illnesses. >> hello, there. >> he says modern medicine has become so good at keeping the terminally ill alive by treating complications of underlying disease that the inevitable process of dying has become much harder and is often prolonged unnecessarily. >> families cannot imagine there
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could be anything worse than their loved one dying. but in fact, there are things worse. most generally, it's having someone you love die badly. >> and what do you mean by "dying badly"? >> dying suffering. dying connected to machines. i mean, denial of death at some point becomes a delusion, and we start acting in ways that make no sense whatsoever, and i think that's collectively what we're doing. >> a vast majority of americans say they want to die at home, but 75% die in a hospital or a nursing home. how do so many people end up in the hospital? >> it's the path of least resistance. >> dr. elliott fisher is a researcher at the dartmouth institute for health policy, which did a detailed analysis of medicare records for patients in the last two years of their lives. he says it is more efficient for doctors to manage patients who are seriously ill in a hospital situation and that there are
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other incentives that affect the cost and the care that patients receive, among them, the fact that doctors get paid based on the number of patients that they see and that most hospitals get paid for the patients they admit. >> the way we've set up the system right now, primary care physicians don't have time to, you know, spend an hour with you, see how you respond, if they wanted to adjust your medications. the easiest thing for everybody up the stream is to admit you to the hospital. i think 30% of hospital stays in the united states are probably unnecessary given what our research looks like. >> that's a staggering figure. >> it's a huge amount. >> and once someone is admitted to the hospital, fisher says they're likely to be seen by a dozen or more specialists who will conduct all kinds of tests, whether they're absolutely essential or not. >> they did x-rays. they did blood workup. they did lung capacity tests. >> meredith snedecker's 85-year-old mother spent her last two months shuttling between a nursing home and a community hospital in new jersey, suffering from advanced heart and liver disease.
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dorothy glass was a former nurse who had signed a living will expressing her wishes that no extraordinary measures be taken to keep her alive. but that didn't stop a legion of doctors from conducting batteries of tests. >> i can't tell you all the tests they took, but i do know that she saw over 13 specialists. >> what kind of specialists? >> neurological. gastroenterologists. she even saw a psychiatrist because they said she was depressed, and she told the psychiatrist, "of course i'm depressed. i'm dying." >> when we reviewed the medical records, we discovered that there weren't 13 specialists who attended to her mother; there were 25, each of whom billed medicare separately. the hospital told us that all the tests were appropriate, and an independent physician who reviewed the case told us it was fairly typical. among the tests conducted was a pap smear which is generally only recommended for much younger women, not an octogenarian who was already dying of liver and heart
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disease. >> in medicine, we have turned the laws of supply and demand upside down. >> what do you mean? >> supply drives its own demand. if you are running a hospital, you have to keep that hospital full of paying patients in order to, you know, meet your payroll, in order to pay off your bonds. >> so the more mri machines you have, the more people are going to get mri tests. >> absolutely. >> well, there are people that would argue this is great medicine that tested for every conceivable possible malady you might have. >> the best care may well be staying home with the trial of a new medication rather than being admitted to a hospital where you can be exposed to a hospital-acquired infection. we have a system that rewards much, much more care. >> in almost every business, cost-conscious customers and consumers help keep prices down but not with health care. and that's because the customers and consumers who are receiving the care aren't the ones paying the bill. >> the perverse incentives that exist in our system are magnified at end of life. >> david walker used to be the government's top accountant,
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the head of the government accountability office, the gao. he now heads the peter g. peterson foundation, which is a strong advocate for reducing government debt. he says that 85% of the health care bills are paid by the government or private insurers, not by patients themselves. in fact, most patients don't even look at the bills. does that make any sense? most things you buy, the customer has some impact. >> we have a system where everybody wants as much as they can get, and they don't understand the true cost of what they're getting. the one thing that could bankrupt america is out-of-control health care costs, and if we don't get them under control, that's where we're headed. >> as we'll see when 60 minutes on cnbc returns, patients with their family's support often find it easier to hope for medical miracles than to discuss
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>> as steve kroft reported in november of 2009, end-of-life health care may prolong life, but the cost of doing that may also bankrupt the country. >> with end-of-life care, there are also delicate cultural and political considerations. patients with their family's support want to cling to life, and it is often easier to hope for medical miracles than to discuss how they want to die.
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>> hey, charlie, i want you to meet somebody. how you doing? >> when we met charlie haggard, he was 68 years old and suffering from liver and kidney failure. he wanted a double transplant which would cost about $450,000. but doctors told him he was currently too weak to be a candidate for the procedure. at a meeting with charlie's family and his doctors, dr. byock raised the awkward question of what should be done if charlie got worse and his heart or lungs failed. dr. byock told him that resuscitation rarely works on someone in charlie's condition and that it could lead to a drawn-out death in the icu. >> either way you decide, we will honor your choice, and that's the truth. should we do cpr if your heart were to suddenly stop? >> yes. >> you'd be okay with being in the icu again? >> yes. >> i know it's an awkward conversation. >> it beats second place. >> [laughs]
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>> you don't think it makes any sense. >> it wouldn't be my choice. it's not what i advise people. at the present time, it's their right to request it. >> and medicare has to pay. >> and medicare pays for it. >> charlie haggard died a few months later. a family member told us his condition had deteriorated so much, they decided to let him go peacefully. but when it comes to expensive high-tech treatment with some potential to extend life, there are few restrictions. by law, medicare cannot reject any treatment based upon cost. it will pay $40,000 for a 93-year-old man with terminal cancer to get a surgically implanted defibrillator if he happens to have heart problems too. >> i think you cannot make these decisions on a case-by-case basis. it would be much easier for us to say, "we simply do not put defibrillators into people in this condition." meaning, your age, your
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functional status, the ability to make full benefit of the defibrillator. now, that's--again, that's going to outrage a lot of people-- >> but you think that should happen. >> i think at some point, it has to happen. >> well, this is a version, then, of pulling grandma off the machine. >> you know, i have to say, i think that's offensive. i mean, i just--i spend my life in service of affirming life. i really do. and to say we're going to pull grandma off the machine by not offering her a liver transplant or her fourth cardiac bypass surgery or something is really just scurrilous. and it's certainly scurrilous when we have 46 million americans who are uninsured. >> every other major industrialized nation but the united states has a budget for how much taxpayer funds are allocated to health care, because they've all recognized that you can bankrupt your
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country without it. >> so you're talking about rationing. >> listen, we ration now; we just don't ration rationally. there's no question that there's going to have to be some form of rationing. let me be clear. individuals and employers ought to be able to spend as much money as they want to have things done, but when you're talking about taxpayer resources, there's a limit as to how much resources we have. >> but if recent history is any guide, rationing has become the third rail of american politics, even though dr. elliott fisher says we already limit health care based on income and whether people have insurance. after analyzing medicare records for end-of-life treatment, he's convinced that there is so much waste in the present system that if it were eliminated, there'd be no need to ration beneficial care to anyone. multiple studies have concluded that most patients and their families are not even familiar with end-of-life options and things like living wills, home hospice, and pain
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management. >> and the real problem is that many of the patients who are being treated aggressively, if you ask them, they would prefer less aggressive care. they would prefer to be cared for at home, they'd prefer to go to hospice, if they were given a choice, but we don't adequately give them a choice. >> at some point most doctors know that a patient's not likely to get better. >> absolutely. >> and after you've run through all the choices then... >> sometimes there's a good conversation; often there's not. you know, patients are left alone to sort of figure it out themselves. >> marcia klish might have lingered for quite some time in the intensive care unit at dartmouth hitchcock, but dr. byock and his team had a number of meetings with her closest friend, barbara minchin. she said klish would not want to be kept alive on machines if there was no meaningful hope of recovery. it was decided that doctors would not try to resuscitate her if her condition worsened, which it soon did. >> her heart has just flipped into a rhythm that doesn't allow
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it to beat effectively. >> she died a few moments later. >> this is a hard time in human life, but it's just a part of life. collectively, as a culture, we really have to acknowledge that we're mortal, get over it, and start looking at what a healthy, morally robust way for people to die looks like. >> in march of 2010, president obama signed into law the much-debated health care reform legislation. the intent of the law is to slow the growth of medicare expenses, but none of the end-of-life issues raised in our story are addressed in the new law. in fact, the new legislation actually reduces medicare payments for hospice programs which studies have shown are very cost-efficient. our next story involves a widely used family of chemicals known as phthalates, which may be
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affecting our health and are found in everyday items like shower curtains, shampoos, perfumes, and even children's toys. in fact, our exposure to phthalates is so ubiquitous, we all have traces of the chemical in our bodies. even though phthalates have been used since the 1920s, a recent group of studies has shown that the chemical disrupts hormone activity and may be causing a slow and steady demasculinizing of men. and in 2009, congress followed europe's lead and banned certain phthalates for use in children's toys. congress came under pressure to act because of a study by dr. shanna swan, an epidemiologist at the university of rochester medical school. dr. swan compared the levels of phthalates in a group of pregnant women with the health of the baby boys they gave birth to. did you find that the higher the level of phthalates
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in the mother's urine during pregnancy, the greater the problems in the young boys? >> yes. >> what did you find in the babies? >> we found that the baby boys were, in several subtle ways, less completely masculine. >> dr. howard snyder, a pediatric urologist at children's hospital in philadelphia, says swan's findings line up with what he's seeing in newborn baby boys-- an alarming increase in deformed sex organs. >> lie him down, and let me just examine him. >> dr. snyder operated on one-year-old griffin to correct something called hypospadias, a birth defect that causes problems in urination. but he's good now, right? >> he's a healthy little guy, who's, i think, going to get through the rest of life just aiming without any difficulty at all. >> that's great. >> we hear that there are more and more and more cases of hypospadias. are you seeing a lot? >> 30, 40 years ago, the best data we had then was that hypospadias occurred in about
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one in every 300 live male births. it's up to now about one in 100, so there's been a three-fold increase. >> there's also been a two-fold increase in another abnormality--undescended testicles. snyder says something seems to be interfering in the womb with the production of testosterone causing the male organs to form improperly, and he suspects it may be phthalates. you're moving in on these chemicals; you don't think whatever we're seeing is smoking or diet or something else? >> i think it's the chemical exposures that are most telling. >> he points to studies beyond shanna swan's that seem to link phthalates to low sperm counts and low testosterone levels in adult males. >> there's just too much incremental data that has built up to be ignored, and i think that it's a real phenomenon. i really honestly do. >> look around dr. snyder's hospital, and you see how phthalates can make their way
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into our bodies. they're in the i.v. bags and the tubing, for instance. when premature babies hooked up like this were studied, researchers found that their phthalate levels soared. who would have thought chemicals embedded in plastic leach out? well, they do in small amounts, but studies are beginning to suggest that even small amounts can have an effect. if it is shown definitively that phthalates are dangerous, it won't be easy to get rid of them. to show us just how pervasive phthalates are in our lives, dr. swan took us through a suburban house, sniffing, squirting, and squeezing our way around, looking for flexible plastic, things that typically contain phthalates, like vinyl rain coats. >> soft and flexible. >> the bathroom shower curtain and... >> duckies are squishy. >> the rubber duckies. the car. turns out, they were also in things that aren't so pliable.
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>> dashboard. steering wheel. gear shift. >> and things you can't even see. >> and then that new car smell. >> phthalates make fragrances linger longer, whether in cars... what about this? or in air fresheners. what have you found in the bathroom that's suspicious to you? phthalates get inside us in a variety of ways, for instance, from products we put on our skin. they help lotions spread and women's makeup retain its color. >> here's powder. >> swan says cosmetics alone could explain why women have higher levels of phthalates than men. what about lipstick? >> yes. >> what about hairspray? >> yes, definitely. >> oh, my goodness. >> nail polish. nail polish remover. >> if you want to know if something you're using has phthalates, it's hard to find out. there's no requirement they be listed on labels. there are so many products with phthalates in the average home, dr. swan says they leak
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out in measurable amounts. >> we've measured indoor air, and it does contain phthalates, as does the dust in your vacuum cleaner bag. >> and we're breathing it. >> yes. >> let's open the fridge and see what they've got in here. we also eat phthalates which have been found in meat. in fact, food could be our biggest source of them. they're in milk, possibly from the plastic tubing at dairy farms. and according to government regulators, they're in tap water tainted by industrial waste. but before you start throwing out everything in your house, you may want to hear a representative from the chemical industry's lobby group who says phthalates are perfectly safe, when 60 minutes on cnbc returns. (vo) you are a business pro.
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>> as i reported in 2010, a family of chemicals known as phthalates is currently being used in everything from shower curtains to lipstick, but despite the environmental protection agency saying phthalates "may pose a health risk," cal dooley, president of the american chemistry council, an industry lobbying group, says the chemical is perfectly safe.
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>> we believe they are absolutely safe, and if you look at every regulatory agency that evaluated the safety of phthalates, they have all determined that they are in fact safe for their intended use, the way they're being used in consumer products today. >> but then came the headlines that read like a parent's worst nightmare: "chemicals feminizing males" and "more birth defects seen in boys." congress reacted, passing that law on phthalates in toys. rick woldenberg is feeling the impact. he runs a toy manufacturing company called learning resources outside chicago. >> it's really perfectly good merchandise. >> he's had to throw away 3,000 toys, and he's remade the rubber duckies and plastic ice cream without the offending phthalates. but what about this child's telescope? >> this isn't soft. >> no, it doesn't have phthalates in it, or if it does, it would be on a small part on the inside. no one's going to eat the telescope. >> and yet under the law,
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he's obliged to spend tens of thousands of dollars to test every single product in his inventory for the phthalates. testing the telescope alone will cost him $8,600. so even if it's not pliable, even if you just know intuitively that phthalates are not in this thing, you still have to have it tested? >> not only that, we have to test even the components that are inside the toy, even the stuff that no human will ever see. >> woldenberg says a law is good intentions run amok, and he points out that congress overrule the findings of the cpsc--the consumer product safety commission--and the food and drug administration, which say the levels we're exposed to every day are safe. the cpsc, which studied phthalates in toys twice, even had volunteers chew on them to see if phthalates oozed out. so why all the alarm bells? well, it all started with
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experiments on rats. >> oh, yeah. >> dr. richard sharpe in edinburgh, scotland, one of the leading phthalate researchers in the world, exposed pregnant rats like these to phthalates and produced a string of abnormalities in their male offspring. >> we see undescended testes. we see this penis abnormality, hypospadias. we see smaller testes in adulthood, which means lower sperm counts. >> so by giving pregnant rats phthalates, you're inducing some of the same problems that human males are having and that you're seeing. >> yes. >> there have been hundreds of studies on rats with similar findings. >> we come to the marmosets here. >> but when dr. sharpe tried the same experiment on animals much closer to humans than rats, monkeys, he got an entirely different response. he tested phthalates on pregnant marmoset monkeys like these. and their offspring?
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completely normal. none of those same effects that you saw with the rats. >> none at all. >> if someone were to tell me there was a rat study that showed one thing and a monkey study that showed another thing, as a human, i would think that i'm closer to the monkey; i would lean toward that study. right? >> yeah. i would say take the species that's closest to man and place more emphasis on that. >> so here's where we stand: a rat study over here contradicted by monkeys over here, then there's a string of new human studies that link phthalates to problems with masculinity, but each one of them is described as small and preliminary. even dr. swan, whose study led to congress banning the phthalates in toys, speaks with uncertainty. are you convinced that phthalates are harmful to humans? >> i'm convinced that they pose a substantial possibility
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of harm. i cannot conclude they are harmful without confirmation of my study and additional data. >> she says she needs more data to be sure, and yet she supports congress's action on toys. the consumer product safety commission said that these toys have minimal to nonexistent risk for these children. >> i don't think we have the data to conclude that. there's-- >> but they're saying you don't have the data to say the other thing either, that they're harmful. >> we have data of harm for the fetus. we have data of harm to a nursing infant, one study. >> but the consumer product safety commission knows everything you know, right? >> i assume so. >> so how can you look at the same data and come out with such different conclusions? >> i think that the interpretation of data is difficult and changing, and at each point in time, we have to decide, what is the action we,
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as a society, want to take? do we want to be more cautious? do we want to be less cautious? >> some manufacturers have chosen more cautious. cosmetics maker avon, johnson and johnson, and s.c. johnson, on their own initiative, are taking all phthalates out of their products. cal dooley of the american chemistry council. is there a panic out there? >> no, i don't think there's a panic. >> what would you call it, 'cause-- >> you know, there are some consumers out there that have some concerns about our products, and we respect that. >> i guess what i'm asking is, is the word "phthalate" now-- does it have such a stigma that the companies are going to demand you find alternatives because they're too afraid that people won't buy their products? >> no, we're not concerned about that. we understand that consumers really value the products that contain phthalates. the market is still strong there. we're going to continue to produce them. >> so while scientists and the epa search for a definitive
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answer on whether phthalates are harmful or not, the question for the rest of us is, should we take precautions now? if i said to you, "are phthalates harmful to humans," what would you say? >> i don't know. it's as simple as that. >> but haven't you advised women to take precautions? >> yeah. >> but based on--why? because of the rats or-- >> well, i think that the public understandably get a bit fed up with people like myself or other people saying, "well, look, you know, these chemicals might cause effects. but on the other hand, they might not." and they say, "well, look, what can i do for my baby in case they do?" so don't use body creams. don't go out and spray insecticide in your garden. don't even do painting in the house. get your husband to do it. >> phthalates are in all those things? >> i'm not saying it's phthalates. i'm saying that that's--what you want to do is avoid environmental chemicals in total
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as much as you can. >> in general, the momentum has been growing against the use of phthalates. the european union and at least 14 other countries have banned some phthalates in children's toys. in this country, california put into effect a total ban on the use of phthalates in toys intended for children under the age of 3. and on the national level, the environmental protection agency is working on new rules regarding phthalates that they hope to issue sometime in 2011 with the actual changes becoming law in 2012. among the possible modifications is a total ban on certain phthalates. in our next story, we'll discover why part of what makes you unique may actually belong to someone else, when 60 minutes on cnbc returns. [ male announcer ] this store knows how to handle a saturday crowd.
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>> science has made great strides in mapping the human genome, and with that understanding has come new ways for doctors to detect and treat inherited conditions. but there's a catch. just because a woman may have a gene that causes breast cancer, it doesn't mean that she owns it. strange as it may seem, that gene may actually be the property of the biotech company that has taken out a patent on it. as morley safer reports, whether you like it or not, under current law, an essential part of who you are may not actually belong to you. >> lisbeth ceriani and genae girard were both diagnosed with breast cancer--ms. girard at age 36, ms. ceriani at 42.
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breast cancer at a relatively young age is often hereditary. >> because of my age and the disease was already very aggressive in me, they thought there is most likely a genetic component at play. >> the way to find out is through a test called brac analysis. it's a blood test in which lab technicians at myriad genetics examine two genes that exist in all of us. if mutations--irregularities-- are found, it means the risk of getting breast cancer and ovarian cancer is extremely high: breast cancer, five times more likely; ovarian cancer, as much as 40 times more likely. since a positive result usually means the removal of ovaries before cancer can develop, doctors told lisbeth she needed to get tested. >> i did try to have the test done several times. >> and? >> my insurance actually covers the test and would pay
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for the test, but the lab won't accept my insurance. >> myriad genetics charges about $3,200 for the test, and most insurance policies do cover it. but myriad won't accept ms. ceriani's plan because it won't pay the full amount. >> i don't have the $3,200 to pay for that test, and i spent days trying to track down what is going on. if my insurance covers it, there must be someplace else i can bring this test. i mean, it's a simple blood test. it's not a complicated procedure. and after all the research, i found out why and learned that myriad is the only game in town, and they want it all. >> myriad genetics controls all testing on the two breast cancer genes because they own the genes lock, stock, and barrel. they patented them. no one else can legally test for them or look at them or even develop potential therapies that are based on them without myriad's consent. when it comes to inherited
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breast cancer, it's myriad or nothing. just ask genae girard. since doctors suspected that her cancer was also genetic, she, too, got tested, and her results were positive. doctors recommended genae have a double mastectomy and have her ovaries removed. >> which was a very tough decision. i mean, i'm still in my 30s, and this is going to change my life, whether or not i ever want to have children. and that was a big deal. >> so she did the obvious-- sought a second opinion, another genetic sequencing from a different lab, but her doctor told her that wasn't possible. >> i think myriad laboratory is a very reputable company, but i know for a fact that there's human error that exists in laboratories, and i would have felt a lot better about these decisions if i had that. >> so whether you like it or not, myriad owns that gene that's in both of you. >> yes.
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>> correct. >> no one invented my gene. they didn't change or alter my gene. all they're doing is actually looking at it. it's crazy. >> lori andrews agrees. she's a professor at chicago kent college of law and has made a specialty of genetics. when we think of patents, we think of things like thomas edison and his light bulb, you know, guys who invented things. >> well, you're right about what the patent law was intended to do, which was to reward inventors who brought something new in the world. but the patent on human genes, it's as if the first surgeon who took a kidney out of your body then patented the kidney. >> it all started in 1980, when the supreme court ruled that a life-form--a genetically altered bacterium used to clean up oil spills--could be patented. biotech companies saw that as an open door to patent another life-form, human genes.
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since then, nearly 10,000 have been patented, nearly a third of the genes in your body and mine. lori andrews says those patents can have serious implications for health care. >> a typical gene patent says, "i own the gene. i own any mutation later found by anybody else. i own any treatment based on the gene later found by anybody else." and in this case, myriad owns breast cancer. >> myriad won a fierce scientific race to identify the first breast cancer gene in 1994. soon after, they patented the discovery, and since then, the company has maintained complete control over testing and has aggressively marketed its own test. >> i found out my risk through brac analysis. >> more than 400,000 women have been tested for the gene, but professor andrews says that myriad's history of patent enforcement has inhibited research and is preventing
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better detection. >> here's the problem with having one company own the gene. there actually is better testing in countries that don't patent the genes, because then lots of different pathologists and laboratories can look at those genes, and some find mutations that the myriad tests missed. >> and there is the issue of cost. in most of europe and canada, where myriad's patents have been challenged or ignored, the test is given at a fraction of the $3,200 myriad charges. if the breast cancer gene was in the public domain, how much do you think it would cost for a woman to be tested? >> i think maybe $300. i've had people, geneticists, tell me they would be willing to do it for less than that. >> myriad declined our interview request, but in a statement, the company says its patents have greatly advanced women's health, that myriad has encouraged research, and the company argues that there are ways for women to get second opinions, but those second opinions do not include
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a full comprehensive screening. myriad is not the only company that aggressively enforces its gene patents. dr. aubrey milunsky, a world-renowned geneticist, knows that firsthand. he's the head of boston university's center for human genetics. >> the detection of genes and gene defects have become critically important because of the massive advances in technology. >> and yet you're prohibited from looking at certain genes. >> we have been stopped from offering some 14 different tests for relatively common conditions. >> stopped by whom? >> i'm really not allowed to talk about them. i'm legally muzzled about that particular subject. >> he can't talk about it, but we can. milunsky can no longer perform gene tests for disorders like muscular dystrophy, polycystic kidney disease, and for a gene that can cause deafness.
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that's because a company called athena labs sent him a cease-and-desist letter when it found out he was testing people for genes they owned. >> a gene is a natural, living thing. how on earth can anyone allow patenting of a gene? >> he's particularly concerned because we've now reached a point where our entire genetic makeup can be examined in one relatively simple test. >> but you may have problems, because if there is a gene within that bunch that indeed has been patented, you can't even report on it, actually. and the lawyers say you shouldn't even be testing it because that's infringing their patent. >> when our story continues, we'll meet a molecular biologist who says the high price we pay for biotech industry patents is actually a fair way to reward those companies for their investments, when 60 minutes
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on cnbc returns.
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>> as morley safer reports, biotech companies have been patenting human genes for years, and those very patents are the reason there have been so many scientific breakthroughs. so says kevin noonan, a molecular biologist and patent lawyer, who often defends the biotech industry. >> without the biotech companies, you don't have the
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things that give you better health in the first place. >> noonan says that patents reward financial risk and that biotech companies would not undertake the huge investment necessary if there was no economic payoff. and while he can't speak for myriad and their breast cancer genes, he believes the price they charge for their test is a fair one. >> you're not only paying that $3,000 for this particular test, but how many years did people try to find this gene and not succeed? and how many other genes have they looked at and not succeeded? that costs money. that costs investment. >> the whole debate is a far cry from the days of jonas salk, who, in 1955, announced he developed a vaccine for polio. >> who owns the patent on this vaccine? >> there is no patent. this is--could you patent the sun? >> he said it was like trying to patent the sun. >> yes, i know. but maybe it was a slightly different time. today you're going to have to have people to get their
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investment back. >> but they're not selling cars; they're selling health. >> whether it's cars or health, there has to be a profit for some investor to invest. if we want to eliminate profit, i think we're talking about a different economic system. >> i don't think people are talking about the elimination of profit; they're talking about a reasonable cost. >> again, i think that, yes, i'd like the test to be cheaper. and when the patents expire, they will be. >> the last of myriad's patents on the breast cancer genes expires in eight years, but if chris hansen has his way, that could be even sooner. he's the lead lawyer for the american civil liberties union in what could be a landmark case against myriad genetics and the u.s. patent office. the case has the support of nearly the entire medical establishment that deals with genetics. >> all of those people are saying, "the patents in this case hurt women's health." >> hansen says that myriad's patents are unconstitutional and should be invalidated.
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>> there's a longstanding patent law doctrine that says you can't patent the laws of nature and products of nature and abstract ideas. and that's what happens when you patent genes. >> but what was the rationale of the patent office in approving this? >> that isolating and purifying the gene is so transformative that it makes it a different thing. >> but it's still not an invention? >> they would say that by taking it out of your body and stripping away some of the pieces, they--it's no longer a product of nature. it's now an invention. we think that's nonsense. if myriad develops a new drug, a new treatment, a new test, they can get a patent, and they should be able to get a patent. what they shouldn't be able to do is get a patent over the gene itself. >> lisbeth ceriani and genae girard are two of the plaintiffs in the lawsuit. since our interview, myriad contacted lisbeth and said she was eligible for a nonprofit program for patients who cannot afford the test. she took the test, and her
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results were positive. she had her ovaries removed a few weeks ago, but the anxiety caused by her genetic inheritance does not end there. given your genetic history, what about your daughter? >> she will have to assume that she's at higher risk, going forward. and one way or the other, i'd make sure she's tested. >> genae girard did go forward with the surgery to have her ovaries removed on the basis of the results of that single test. she still finds it hard to accept that a gene inside her own body is essentially the property of a corporation. >> in march of 2010, a federal judge sided with the aclu in its case against myriad genetics, stating in essence that breast cancer genes are products of nature and that their patents were improperly granted. myriad is appealing the decision, but in another setback
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for the company, the department of justice recently came out against the patenting of human genes, saying, "dna that has merely been isolated from the body, without further alteration or manipulation, is not patent-eligible." well, that's this edition of 60 minutes on cnbc. i'm lesley stahl. thank you for joining us. captioning by captionmax www.captionmax.com
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